Hard to Hear Special Needs Advice No One is Telling You
Keep Emotions in Check
This is tough to discuss without coming across cold and insensitive. Special needs parenting is no joke. There is exhaustion, heartbreak, and ample opportunities for worry. We will cry. We will need to be picked up.
With the above reality comes a slippery slope of spending too much time in these areas. I thank God for people who did not allow me to linger and risk the chance of a downward spiral. Early on my husband said, "If we are feeling sad it is for ourselves, not our daughter. We are going to love her and give her a great life." His words helped me realize I was making this too much about me.
Another impactful moment in those early years came from my boss. She did not pull me into the office to talk job performance but rather to sincerely say, "The words you use when talking about your daughter make it sound like she is a burden. That should stop."
These words long ago changed the trajectory of my special needs parenting. Feel all that you need to feel, but be careful not to stay there too long. If we are going to find joy and purpose in the journey, there comes a time to stop feeling sorry for ourselves.
(Click here for a recent LOMAH article expanding on the importance of balancing truth and grace.)
Silence Fear and Anger
It wasn't until my daughter was in her teen years that I began to notice how much fear and anger exist in special needs circles. The first decade everyone is learning how to navigate. Life is ca-ra-z and full of hospitals, therapies, and a whole lot of initials. If you parent a special needs child you know the meaning of IEP, SLP, OT, ESY, IDEA, IFSP, SSI, and countless other acronyms. Well done, or shall we say, "WD".
Once on a solid foundation, we begin looking out at the landscape of our journey. Part of the landscape is injustice and abuse. It's super ugly and at many exit ramps. We need to be aware of the possibilities, but we do not need to take this exit ramp for our rest stop (unless it feels like an area of calling).
I fell into this trap a few years ago on chat strands and groups sending frequent notifications of injustices present in the special needs world. Their fear and anger began to be the window I was using to gaze into the future for my daughter. Fortunately, a close friend picked up on what was happening and told me to unsubscribe. She saw how the tone of these advocacy messages were igniting fear and giving life to anger which contradict God's voice.
(Read more on choosing to listen to God's voice in this LOMAH article).
Advocate with Grace
I can't tell you how many times I hear the charge to be an advocate. We are celebrated for being advocates and we should be. Those IEP and IPP meetings are intense. The world can be a place of ick and ugly toward us. Advocacy is part of the gig. BUT...advocacy can quickly turn into mindsets of us against them, even toward those who mean well.
Do we really need to get upset with friends and family offering advice? Rather than feel annoyed, perhaps we can focus on how much they love our child and offer grace.
Is pointing out every area of concern the best approach to take with underpaid and over worked teachers? I have found the team often becomes all I hope for when my focus shifts to them and their needs before those of my child. When grace is extended, the team begins to thrive. I have two intense examples of a time grace was needed and given, but that is for another day. Just know some rubber has met the road for me in applying this piece of advice and 75% of the time, grace has been the best tool for effective advocacy.
Aggressive advocacy offers no guarantees of changing others but extending grace does guarantee a change in us. Going for the sure thing from time to time seems like a good idea.
Here is a LOMAH article on the importance of grace while in the heat of the moment.
Don't Use It as an Excuse and Then Do Use It as an Excuse
It's super easy to say no to things we really want to do because it's too hard. It's hard to find a babysitter. It's hard to travel. It's hard to have family outings. Yep. True. But do you want to do it? Yes? Then find a way even if it's exhausting on the front and back side. You deserve a bit of what you want so don't deny yourself or seclude yourself from family and friends. You are a caretaker of someone with special needs which means you know how to make the impossible possible.
Write that 15 page single spaced instructional guide for the respite provider and don't look back. Know full well everything will not be done right (per your standards) and you will find fault upon returning. The choice is to get over it or to live a life saying no to soul filling opportunities and risk growing resentful. Personally, I would rather get over it and practice more of that "give grace" thing mentioned above.
On the flip side, use the "it's too hard card" every now and then! A good example for our family is eating at restaurants. I'm not a fan of eating out...at all. Fortunately, when we do eat out, my daughter is bothered by the noise. She walks to other tables and grabs the drinks of strangers. She loves to toss silverware on the floor. You better believe unless it's Grandma's 75th birthday or Cousin Andrew's graduation, we are going to take a pass and have pizza delivered. I'll do the dishes.
Remember It's Not Our Story or Even Our Child's Story, It's God's Story
There is an epic story taking place and we have been invited onto the stage for a short scene. Often my tendency is to mistake my or my child's small scene as the plot. Not true. We are not the main characters and to think otherwise is to misstep in identity, purpose, and joy. The more I know His story the more I understand who He is and who we are to Him.
Grasping His truth helps me follow the pieces of advice in this article. I begin to experience how setting my mind on things above (Col 3:2) keep emotions in check. I become awake to the many ways He provides (Matt 10:29-31) which shake away fear and anger. An awareness of His continual grace toward me (Eph 2:4-9) leaves no choice but to extend grace to others. Perspective of how quickly this life will come and go (James 4:14) encourages me to live with out excuses. These are pieces of life changing advice I hope everyone in the special needs world has the opportunity to put into practice.
Listen to advice and accept discipline,
and at the end you will be counted among the wise.
Many are the plans in a person’s heart,
but it is the Lord’s purpose that prevails.